The Beginning - Health Care Rabbit Hole
How do you write about your life when you’re currently overwhelmed by life? I worry about how depressing it all sounds even filling in close friends, and here I am trying to figure out how to tell the internet about it. I realize there’s a lot of anger and cynicism that will come out. That’s just where I’m at right now.
My father’s health has been deteriorating for the better part of 5 years. He was misdiagnosed with Parkinson’s which led to a vicious cycle of doctors treating the side effects of drugs with more drugs which led to new side effects and new drugs to treat those side effects until they had no clue what was going on. Most of their later effort was spent gently nudging us towards the nearest nursing home.
Listing a few highlights of the wonderful health care system we’ve been battling seems pertinent.
In Bowling Green his lung doctor stopped his antidepressant cold turkey without consulting his psychiatrist, then told him he had stage 4 lung cancer and should expect to live about 6 months, without having any test results to back this up….and it ended up not being the case. Whaaaaat?!?!?!?!?!
We fled to an ER in Louisville after he was discharged with “nothing left to treat”. He had 2 liters of fluid on his lungs, basically drowning. I’d say that’s not normal and qualifies as a reason to be in the hospital.
Within 3 weeks of being in Louisville they had over-medicated him to the point of delirium, confusion, and aggression. Rather than stopping the medication which was causing him to be too much to handle for the nursing staff, they sedated him to the point he couldn’t feed himself, had him in restraints, put a feeding tube in his mouth and called my sister to tell her we should think about signing DNR papers. For the person who has no idea what that is, it stands for DO NOT RESUSCITATE. Once again, trying to kill our father with drugs, laziness, and incompetence.
I couldn’t make this up if I tried, and the saddest part is that if my sister weren’t a nurse he would probably have gone to a nursing home and would most certainly be dead by now. It makes me sad thinking about how many older people are in nursing homes or dead because of crippling medications they shouldn’t be taking.
My sister demanded a transfer to Vanderbilt in Nashville and within 3 days our father was feeding himself again. How? They stopped all his medication to start from scratch and observe him. Anyone who knows how to troubleshoot any kind of mechanical object might be thinking, “That’s completely what I would have done and I’m not a doctor.” My thoughts exactly. If they were mechanics I wouldn’t let them work on my car.
Here’s how most hospitals, except Vanderbilt, work. You go in, get every test on earth done to you so they can bill insurance, see specialists for around 2 minutes a day, have completely different nurses looking after you each shift that don’t fill in their charts adequately enough so no one is actually able to monitor whether you’re making positive progress or declining, no one listens to family about prior history, and they attempt to shovel pills down your throat regardless of if someone tells you those very same pills make the person go bonkers.
If there’s not a yelp for doctors that lists which pharmaceuticals companies they’re getting kickbacks from there should be. One of you smart people get on that.
Around a year and a half of hospital / rehab rooms after his initial Parkinson’s diagnosis the Vanderbilt neurologist said it looked like something called Normal Pressure Hydrocephalus, ie. too much fluid in the brain. It can cause, drum rollllllllll, Parkinson’s like symptoms. Feet getting stuck to the floor, shuffling gate, trouble focusing, urinary retention, etc. But since he’d been bedridden for a year and a half and lost most of his strength, the lumbar puncture test that would show whether a decrease in spinal fluid pressure would relieve his symptoms would be ineffective. He needed to be stronger to have the test and stronger still to have the surgery for the permanent brain shunt if the diagnosis was correct.
I’ll leave it here till next blog to avoid writing a novel, but I’d like to urge everyone who is facing serious illness, young or old to never blindly trust your doctor. Always get second and third opinions and find a family member or friend that works in the health care system to advise you, because honestly, we have a distorted view of what going to medical school makes you capable of. Troubleshooting skills seem to not be taught, and arrogance is rampant. If by chance they have the best intentions and heart, they can still kill you with incompetence. Watch your backs, and if you have any crazy hospital stories or advice for people on how to navigate the healthcare system, feel free to share.
To Be Continued,